The long-term chronic neurological condition Parkinson's disease affects around 120,000 people in the UK

Introduction

Parkinson's Disease is named after Dr James Parkinson, who first identified it in 1817. Parkinson's disease affects the way the brain co-ordinates body movements, including walking, talking and writing.

Who is affected by Parkinson's disease?

Parkinson's disease affects men and women, although men are statistically slightly more likely to develop it than women.

The risk of getting Parkinson's disease increases with age. Symptoms usually appear in people who are over the age of 50. However, younger people can also be diagnosed with Parkinson's disease.

Young-onset Parkinson's disease

When the symptoms of Parkinson's disease occur in a person between 21 and 40 years of age, it is known as young-onset Parkinson's disease.

Juvenile Parkinson's disease

If a person is diagnosed with Parkinson's disease before the age of 18, it is known as juvenile Parkinson's disease. This is very rare.

Of the 10,000 people diagnosed with Parkinson's disease in the UK each year, 1 in 20 is under the age of 40.

Symptoms of Parkinson's disease

The symptoms of Parkinson's disease usually begin slowly and develop gradually, in no particular order.

Parkinson's disease affects everybody differently. Each person with the condition will have a different collection of symptoms and will respond differently to treatment. The severity of the symptoms also varies between people.

There are three main symptoms of Parkinson's disease.

Slowness of movement (bradykinesia)

Parkinson's disease can make moving difficult, particularly when you try to start moving, and it can take you longer to perform tasks.

You may lack co-ordination in your movements. Often, this slowness of movement is attributed to old age. This means that some people are not diagnosed with Parkinson's disease until other symptoms develop.

Shaking (tremor)

Shaking usually begins in one of your hands or arms. It is more likely to occur when the particular part of your body is at rest. Shaking usually decreases when you are using the body part, and it can be more noticeable when you are stressed or anxious.

The presence of a tremor does not necessarily mean that you have Parkinson's disease. Tremor is also a symptom of other conditions and is most commonly due to a harmless condition called essential tremor.

Although most people associate Parkinson's disease with tremor, up to 30% of people with the condition do not have tremor.

Stiffness of muscles (rigidity)

If you have Parkinson's disease, your muscles may feel tense. Due to the stiffness, you may have trouble performing simple everyday tasks.

For example, you may find it difficult to turn around, get out of a chair and roll over in bed. Fine finger movements, facial expressions and body language may also become difficult.

Other symptoms associated with Parkinson's disease include:

tiredness

constipation and bladder weakness

depression

problems with handwriting, speech and balance

difficulty swallowing

Parkinsonism

When seen together, the three main symptoms associated with Parkinson's disease (slowness of movement, shaking and stiffness) are known as parkinsonism. Parkinsonism does not only happen in Parkinson’s disease. This collection of symptoms can be caused by drugs or other conditions, including:

Multiple system atrophy (MSA). This neurodegenerative disorder affects your motor system (it causes the deterioration of brain signals to the muscles and limbs responsible for movement).

Progressive supranuclear palsy (PSP). This is another degenerative disorder that affects vision and movement.

Both of the above disorders have similar symptoms and effects as Parkinson's disease.

Causes of Parkinson's disease

Parkinson's disease is caused by a loss of nerve cells in the part of the brain called the substantia nigra. The nerve cells in this part of the brain are responsible for producing a chemical called dopamine. Dopamine acts as a messenger between the brain and the nervous system, and helps control and co-ordinate body movements.

If these nerve cells become damaged or die, the amount of dopamine in the brain is reduced. This means that the part of the brain that controls movement cannot work so well, which causes movements to become slow and abnormal.

The loss of nerve cells is a slow process. The level of dopamine in the brain falls over time. Only when 80% of the nerve cells in the substantia nigra have been lost will the symptoms of Parkinson's disease appear and become gradually worse.

Why does Parkinson's disease occur?

It is not known why the loss of nerve cells associated with Parkinson's disease occurs. Research is ongoing to identify potential causes.

Genetics

Some research has shown that Parkinson's disease tends to run in families. The exact role that genetics plays in causing Parkinson's disease is unclear. Studies have shown a link between a number of different genes and the development of Parkinson's disease.

It is likely that having these genes makes people more vulnerable to developing the condition. However, having the genes does not necessarily mean that you will develop Parkinson's disease.

Environmental factors

Other research is being carried out into environmental factors, such as toxins and pesticides. It is thought these may directly damage the brain, causing nerve cells to die.

Diagnosing Parkinson's disease

No tests can conclusively show that you have Parkinson's disease. Your doctor will base a diagnosis on your symptoms, your medical history and the results of a clinical examination.

Your GP will ask you some questions and may get you to perform a task or walk around. This will help with the diagnosis.

In the early stages of Parkinson's disease, your GP may find it difficult to say whether you definitely have the condition because symptoms are usually mild.

If your GP suspects that you have Parkinson's disease, you will be referred to a specialist (a neurologist or geriatrician). If your GP thinks that you may be in the early stages of Parkinson’s disease, you should see a specialist within six weeks. If they think you may be in the later stages of Parkinson’s disease, you should see a specialist within two weeks.

Diagnostic tests

Although no test can conclusively diagnose Parkinson’s disease, your specialist may offer you a test that will allow them to look more closely at your brain.

SPECT (single photon emission computed tomography) scan

To help the specialist understand what is causing your tremor, you may be offered a scan of your brain called a SPECT scan (trade name DaT scan). This takes a series of pictures of your brain to find out whether there is any dopamine deficiency, which is seen in Parkinson's disease.

MRI scan

Your specialist may offer you an MRI scan. This can help them rule out other conditions that may have caused your symptoms.

Treating Parkinson's disease

What is good care for Parkinson’s disease?

The Department of Health has developed a National Service Framework (NSF) for long-term neurological conditions. The NSF was developed in consultation with people with long-term neurological conditions to raise standards of treatment, care and support across health and social care services. It allows health and social care professionals to plan and deliver services that are:

quicker and easier to use

more closely matched to people's needs

better co-ordinated so people do not have to see too many professionals and tell them the same information repeatedly

planned around the views of people with long-term neurological conditions and their carers

able to give people more choice about how and where they get treatment and care

better at helping people to live more independently

The National Institute for Health and Clinical Excellence (NICE) has published a clinical guideline for Parkinson’s disease. The guideline provides comprehensive evidence-based information on the benefits and limitations of the various methods of diagnosing, treating and caring for people with Parkinson’s disease. This helps health professionals and patients decide on the most appropriate treatment.

The NICE guideline states that if you have Parkinson’s disease, a healthcare professional, such as a Parkinson’s disease specialist nurse, should provide you with help. They should:

regularly check how your medicines are making you feel and make changes to your medication if necessary

be a point of contact and support for you and your family or carers, and come to see you at home when appropriate

give you reliable information about Parkinson’s disease, its symptoms and treatments, and the wider issues that can affect people with the disease and their family or carers

Living with Parkinson's disease

A diagnosis of Parkinson’s disease is life changing. You will need long-term treatment to control your symptoms and you may have to adapt the way you do simple daily tasks.

Self-care

Self-care is an integral part of daily life. It means that you take responsibility for your own health and wellbeing with support from the people involved in your care. Self-care includes the things you do each day to stay fit, maintain good physical and mental health, prevent illness or accidents, and effectively deal with minor ailments and long-term conditions.

People living with long-term conditions can benefit enormously if they receive support for self-care. They can live longer, have less pain, anxiety, depression and fatigue, have a better quality of life and be more active and independent.

Regular reviews

Because Parkinson’s disease is a long-term condition, you will be in regular contact with your healthcare team. A good relationship with the team will allow you to easily discuss your symptoms or concerns. The more the team knows, the more they can help you.

Keeping well

Everyone with a long-term condition such as Parkinson’s disease is encouraged to get a flu jab each autumn to protect against flu (influenza). They are also recommended to get an anti-pneumoccocal vaccination, which protects against a serious chest infection called pneumococcal pneumonia.

Healthy eating and exercise

Regular exercise and a healthy diet are recommended for everyone, not just people with Parkinson’s disease. They can help prevent many conditions, including heart disease and many forms of cancer. Eat a balanced diet containing all the food groups to give your body the nutrition it needs. Exercising regularly can help relieve stress and reduce fatigue.